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Autism Numbers May Decline Under New DSM

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After years of escalating growth, a new study looking at data from the U.S. Centers for Disease Control and Prevention suggests that autism rates could drop off thanks to new diagnostic criteria for the developmental disorder.

In a review of surveillance data on 8-year-olds with autism collected by the CDC in 2006 and 2008, researchers found that nearly 1 in 5 of the youngsters would not have qualified for a diagnosis on the autism spectrum under updated criteria in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders.

Last year, a fifth edition of the DSM was published which included sweeping and controversial changes to the diagnosis of autism. The new version of the manual altered the diagnostic criteria and did away with Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified, instead creating an umbrella classification of “autism spectrum disorder” with clinicians indicating a level of severity.

The change was met with significant trepidation among many in the autism community who were concerned that individuals might be stripped of their diagnosis and lose needed services. In response, those behind the DSM update appended the autism entry with a note indicating that people with an existing diagnosis on the spectrum should retain the label.

In an effort to assess how this change could impact autism prevalence going forward, researchers looked at medical and educational records for 6,577 kids diagnosed with autism under the previous edition of the DSM who were part of the CDC’s surveillance efforts. They found that only 81 percent of the children would qualify for an autism diagnosis under the DSM-5 definition, according to the study published Wednesday in JAMA Psychiatry.

“Autism spectrum disorder prevalence estimates will likely be lower under DSM-5 than under DSM-IV-TR diagnostic criteria, although this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria,” the authors wrote.

Many of the kids who no longer appeared to qualify were missing just one criteria for the diagnosis, said Matthew J. Maenner of the CDC’s National Center on Birth Defects and Developmental Disabilities who led the study.

“It is important to point out that we cannot predict what will happen in the future with how individuals with ASD are diagnosed, or how (or when) professionals will adapt to the new diagnostic criteria,” Maenner said.

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Comments (10 Responses)

  1. Sarah says:

    This will be artificial decrease. the fact is these kids still exist but will fall off the radar into diagnostic limbo thanks to the DSM criteria change. I hope the CDC and DSM realize that behind the numbers are real children who will likely lose services. No autism numbers won’t just magically decrease instead more kids will become invisible.

  2. Mario says:

    Just because they don’t qualify for a diagnosis because the criteria are more strict doesn’t mean these people will have no problems.

    Yes, people who are really mild cases now might fall of the radar, and those might already be the people that don’t need any support to start with.

    At some point you will end up with only the severe cases and that’s the only group services are geared towards. You can only qualify if you got the full package.

    And in years we’ll probably notice how a lot of people are “healthy” but still fail to function and we don’t have a clue why they don’t just “get along”.

    If anything, I think the new criteria are a way to make diagnosis more black and white rather than shades of grey that we used to have. Too bad that mental illness doesn’t deal in these exact absolutes…

  3. vmgillen says:

    I remain convinced that the DSM-V changes were made primarily to create billable hours with easier populations. Look at it, read it! I hope to see studies next year that show where these “ineligibles” end up, viz. the American Psych. Assoc… if the “spectrum” involves impaired social (which includes, after all, communication) skills, does that not include a great, great many of the other groupings? Schizophrenia, eg? or OCD, or… after all, you get a diagnosis because you aren’t fitting in with society, for heaven’s sake. I charge the APA with jumping on the “Autism” bandwagon. For a long time the APA would ONLY consider cognitive/analytical… so Applied Behaviour Analysis, one of the therapeutic regimens consistently found to be effective, was not sanctioned. Then Autism became the Diagnosis-du-jour, but some of those people were really, really challenging – the revised DSM allows more billings and cherry -picking, in the name of clarification. However, the net effect has been to seriously muddle the science (research into Autism is often using cherry-picked populations – the headlines excite hope, but generally those hopes are dashed on closer examination), and set the Autism community at each others’ throats. The APA has done a HUGE disservice to everyone but their own members.

  4. Rene Thompson says:

    The numbers will decrease only because children will fall through the newly created cracks.

  5. PBMom says:

    Well, they needed someway not to panic people any further that numbers are rising. How better than to change the criteria so people cannot track apples and oranges anymore. OF COURSE, the CDC is happy.

  6. Miranda says:

    The article says 81% of the kids in the study qualified for an Autism diagnosis under the new criteria. That’s a large majority. Did the other 19% qualify for any other diagnosis? Like it or not, a diagnosis is essential for school age children to qualify for an IEP (Individualized Education Plan). An IEP provides a legal mechanism for children to be provided with accommodations, modifications, and other supports to make a Free and Appropriate Education available to them through our school system.

    Also, the DSM is nothing more than APA member doctors agreeing on what features make up specific diagnosis. It is NOT based on science. The National Institutes of Mental Health (NIMH) are working on their own version of the DSM that IS based on real science. Its called the Reasearch Domain Criteria (RDoC)

  7. Paulo says:

    The DSM-5 is decidedly pro BigPharma and reluctant to help differentiate anything that won”t generate pharmaceutical sales. Autism and learning disorders are not chemically-treatable and, therefore, best lumped under one umbrella to not waste the prescriber’s time, and printing costs. Call me cynical – and I am.

  8. Kylie says:

    My son is 11 and only was thought he might have autism about a year ago and do we went through all the tests before the diagnosis my son was Initially brushed off prior to any testing they thought nothing was wrong then dsm changed when I read it I was so scared cause I one I know my son was most likely more aspergers he had his diagnosis only a few days ago and we were told yes he does have autism but they told us he literally just scraped through and he has mild autism said under old would have been told aspergers I really feel for everyone It’s such a hard thing according to the experts my son can hide it for a little bit it’s only when u spend more time u notice things like lack of 2 way convo

  9. Avery says:

    This is a good change..an honest effort to do a better job in diagnosing kids! There are far too many children diagnosed with this disorder (who often don’t actually meet the criteria) by practitioners who aren’t adequately trained or experienced or knowledgeable and/or don’t conduct comprehensive appropriate evaluations to properly diagnose this disorder!

  10. Christine says:

    @Mario
    You obviously have not worked with people on the autism spectrum or other mental health issues because if you have or do and have the opinion that diagnostic criteria should be black and white, I feel sorry for the people you work with! NO two people present mental or developmental disabilities the same way because no two people, not even identical twins, have the exact same experiences. For a long time, girls were not diagnosed with autism at all, it was considered a ‘boy’s disorder’ but what researchers and psychologists and psychiatrists came to realize is that girls present differently than boys because they are female and are wired differently and treated differently. If the DSM goes to ‘black and white’ diagnostic criteria, we will have a lot more homeless people who can’t get services and need them and a much higher suicide rate for the same reason!
    My 17 year old daughter with ASD level 1 was diagnosed at 12 with Asperger’s and the school refused to accept her diagnosis and follow up appropriately until THEIR expert agreed and diagnosed her this summer with ASD level 1. IN the meantime, she knew she needed help and decided that either she was going to get it or die! She took half a bottle of sleeping pills and no she was NOT home alone but she found the key to the locked box where I hid it and took them out while her cousin was getting ready for work. No one would believe me when I told them that she was suicidal because she DIDN’T MEET THE BLACK AND WHITE CRITERIA spelled out by the INSURANCE companies and State Psych Center for being suicidal! So consider that when you want ‘black and white’ rules for diagnosing mental and developmental disabilities!

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